Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent-maternal dyadic study.

OBJECTIVE: Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain. METHODS: Ten autistic adolescents (6 female, 3 male, and 1 self-identified as agender) with chronic pain and their mothers (n = 10) participated in semistructured interviews concerning their perceptions of living with chronic pain. Participants were recruited from U.K. pain management services. According to preference, interviews were conducted individually (n = 10) or dyadically (n = 10 participants across 5 dyads). Data were analyzed using inductive reflexive thematic analysis. RESULTS: Two themes were generated. Theme 1, "overstimulated and striving for control" described how adolescents' experience of heightened sensitivity enhanced adolescents' levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain, and sensory elements. Theme 2, "not everyone fits the mold" captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference negatively impacted adolescents' ability to engage with and benefit from the standard treatment for chronic pain. CONCLUSIONS: Findings suggest that autistic adolescents living with pain experience pain and face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.

Pediatrician Explanations of Pediatric Pain in Clinical Settings: A Delicate Craft.

Explaining chronic pain to children and families can be challenging, particularly in the absence of an obvious physiologically identifiable cause for the child's pain. In addition to medical intervention, children and families may expect clinicians to provide clarity around the cause of pain. Such explanations are often provided by clinicians who have not received formal pain training. This qualitative study sought to explore the following question: What do pediatricians consider to be important when providing pain explanations to children and their parents? Using semistructured interview methods, 16 UK pediatricians were interviewed regarding their perceptions of explaining chronic pain to children and families in clinical settings. Data were analyzed using inductive reflexive thematic analysis. Analyses generated 3 themes: 1) timing of the explanation, 2) casting a wider net, and 3) tailoring of the narrative. Study findings demonstrated the need for pediatricians to skilfully interpret where children and families are in their pain journey and deliver an appropriate and adaptable explanation relating to individual needs. Analyses identified the importance of providing a pain explanation that could be repeated and understood by others outside the consultation room, to enable children and families to accept the explanation. PERSPECTIVE: Study findings identify the importance of language in addition to familial and broader factors that may influence the provision and adoption of chronic pain explanations provided by pediatricians to children and families. Improving pain explanation provision may influence treatment engagement for children and their parents, subsequently impacting pain related outcomes.

The sands of time: Adolescents' temporal perceptions of peer relationships and autonomy in the context of living with chronic pain.

The incidence of chronic and recurrent pain increases in adolescence. Prevalence of adolescent chronic pain is estimated to be 11%-44%, with approximately 5% adolescents experiencing moderate-to-severe chronic pain. Adolescents with chronic pain also report unwanted changes in emotional, social, and developmental functioning. Very little is known about how adolescents with chronic pain make sense of their development, the role of pain in that development, and how such developmental trajectories progress over time. A multi-methods qualitative study was designed to explore how adolescents make sense of their experience of chronic pain in the context of development. Nine adolescents (8 girls) aged 12-22 years old (Mean = 15.7, SD = 2.8) were recruited from a UK national pain service. Adolescents completed an interview on entering the service, and a follow-up interview 12 months later. They also completed monthly diaries in this 12-month period. Data comprised 18 interviews and 60 diary entries, which were analyzed using inductive reflexive thematic analysis. Analyses generated one overarching theme entitled "tug of war: push and pull," demonstrating developmental tension related to pain, and the cumulative impact these had over time. This overarching theme comprised two subthemes which capture these tensions across the developmental domains of peer relationships and autonomy. The first subtheme, "the shifting sands of peer relationships," explores the ever-changing closeness between self and peers. The second subtheme referred to "restricted choices" and how pain limited the participants' autonomy but that this, over time could push development forward. These results extend previous cross-sectional research on the developmental consequences of chronic pain, showing the dynamic fluctuations and alterations to developmental trajectories over time.

Peoples' experiences of painful diabetic neuropathy: are pain management programmes appropriate?

OBJECTIVE: Painful diabetic neuropathy (PDN) is a painful complication of diabetes. This study aimed to explore: (1) strategies used by participants to manage impacts of PDN and (2) their perspectives on whether strategies from pain management programmes (PMPs) had applicability for PDN. DESIGN: Participants were recruited through local National Health Service (NHS) diabetes and PDN clinics, and nationally from a diabetes support charity. One-to-one interviews were conducted. The transcribed data were analysed using inductive thematic analysis. RESULTS: Twenty-three people were interviewed who had PDN symptoms for mean 10 years. Four themes emerged from the data: seeking help and advice, pragmatic approach to management, perspectives on physical activity and perspectives on psychological coping strategies. CONCLUSION: Some participants were open to the strategies advised by PMP strategies. There were also strong opinions that no exercise or psychological approach could help with diabetes-related pain. It is possible PMPs as currently delivered need to be adapted to maximise engagement from people with PDN. Research is required to understand the healthcare priorities of people with PDN and whether these priorities can be mapped to existing management strategies.

Body mass in adolescents with chronic pain: observational study.

OBJECTIVE: In a paediatric chronic pain population, to determine whether higher body mass was associated with poorer functioning, mood or treatment outcome. DESIGN: Cross-sectional study with examination of treatment outcomes. SETTING: Tertiary specialist adolescent pain rehabilitation unit. PATIENTS: 355 adolescents with relatively severe non-malignant chronic pain. INTERVENTIONS: Intensive 3-week pain rehabilitation programme. MAIN OUTCOME MEASURES: Objective physical measures (walk, sit-to-stand); self-reported functioning and mood RESULTS: Average body mass index (BMI) in the sample was relatively high (24.2 (SD 5.6)) with 20.5% being classified as obese. However, there were no relationships between body mass and objective physical measures, physical or social functioning, depression or anxiety (all p>0.05). There was a small relationship between higher body mass and greater pain-related fear (r=0.17, p<0.01). Treatment improved all variables (p<0.001) apart from pain intensity. There were no relationships between higher body mass and poorer treatment outcome; in fact, patients with higher BMI showed slightly greater decreases in depression (r=0.12, p<0.05) and pain-specific anxiety (r=0.18, p<0.01) during treatment. CONCLUSIONS: Higher body mass does not worsen functioning, mood or treatment response in adolescents with disabling chronic pain. Childhood obesity and chronic pain are both stigmatised conditions; clinicians should avoid implying that high body mass alone is a causal factor in the struggles of a young person with chronic pain.

Pain Acceptance in Adolescents: Development of a Short Form of the CPAQ-A.

OBJECTIVE: Acceptance of pain is a predictor of pain-related disability and treatment outcome in adolescents with pain. This variable has been previously measured using the Chronic Pain Acceptance Questionnaire for Adolescents (CPAQ-A, McCracken, Gauntlett-Gilbert, & Eccleston, European Journal of Pain, 14, 316-320, 2010). We set out to create a short, eight-item, form of this instrument that retained its factor structure and clinical utility. METHODS: We used data collected from two independent samples of adolescents attending residential treatment for disabling chronic pain (N = 187 and N = 159). Both groups completed the 20-item CPAQ-A and indices of functioning and distress. We carried out item reduction and confirmatory factor analysis (CFA) on the first sample, repeating this on the second sample and examining the new scale's correlations with clinically relevant variables. RESULTS: An eight-item scale was created with four items assigned to each established factor (Pain Willingness and Activity Engagement). CFA confirmed this factor structure and it replicated in Sample 2. The new scale (the CPAQ-A8) was sensitive to treatment and correlated as well with clinically important variables as its full-length version. Some items in the new scale differed from the adult CPAQ-8. CONCLUSIONS: Measures of pain acceptance have been previously developed and validated in pediatric and adult samples. This study showed that pain acceptance can be indexed by a brief, yet factorially valid, short form of the CPAQ-A that uses fewer than 50% of the items of the full-length scale and has demonstrated acceptable validity and sensitivity-to-treatment.

A developmental arrest? Interruption and identity in adolescent chronic pain.

INTRODUCTION: Although the pediatric pain literature has explored the role of developmental factors in young children's acute pain, relatively less is known about specific developmental challenges in adolescents with chronic pain. OBJECTIVES: To meet this knowledge gap, this study sought to adopt an idiographic phenomenological approach to examine how adolescents make sense of their own development in the context of living with chronic pain. METHODS: Semistructured interviews were conducted with ten adolescents (12-17 years; 7 females) recruited from a tertiary care pain treatment programme. Interview data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. RESULTS: Study findings identified 2 themes: "An externally imposed lens on identity" and "Paradoxes of developmental progress." The first theme highlighted an understanding of how adolescent identity is perceived. Some adolescents perceived identity as distinct from pain, whereas others perceived identity as part of their chronic pain condition. This theme also detailed how identity was negotiated by adolescents and others through engagement with valued activities. The second theme represented an understanding of how chronic pain disrupts and alters adolescent developmental trajectories at an individual level, suggesting possibilities of enhanced and delayed trajectories. Enhanced trajectories were associated with increased management of emotionally difficult situations and resulted in mastery of complex interpersonal skills. CONCLUSION: Findings provided a nuanced understanding of developmental progress in the context of adolescent chronic pain and suggested challenges with drawing normative comparisons. Future research could extend findings by adopting a longitudinal approach to studying adolescent development and eliciting accounts from broader social groups.

Dispositional Mindfulness and Its Relationship With Distress and Functioning in Adolescents With Chronic Pain and Low-Level Pain.

Objective: Dispositional mindfulness is the general tendency to pay attention to present-moment awareness without judgment. The main aim of this cross-sectional study was to determine (a) whether dispositional mindfulness is associated with psychological distress in adolescents with chronic pain and low-level pain, and (b) whether it accounts for unique variance in distress after controlling for key variables from the pain literature. A secondary aim was to explore the relationship between dispositional mindfulness and functioning. Method: 54 adolescents seeking help for chronic pain and 94 "healthy" adolescents with recent low-level pain from the general population completed the same battery of measures, including the Child and Adolescent Mindfulness Measure of dispositional mindfulness. Results: As predicted, dispositional mindfulness was associated with mood and anxiety in both groups and also accounted for unique variance in mood and anxiety in standard regression models after controlling for group, age, pain-intensity, pain-catastrophizing, and pain-acceptance. Dispositional mindfulness did not differ significantly across the two groups and did not predict physical functioning. However, it did account for unique variance in social functioning. Conclusions: Dispositional mindfulness may be an important construct to consider in the context of adolescents experiencing mood and anxiety problems in both low-level and chronic pain samples. Further research should aim to replicate these findings in larger clinical samples and explore the predictive power of dispositional mindfulness using longitudinal designs.

Evaluation of an Intensive Interdisciplinary Pain Treatment Based on Acceptance and Commitment Therapy for Adolescents With Chronic Pain and Their Parents: A Nonrandomized Clinical Trial.

Objective: Parental factors are central in the development and maintenance of chronic pain in youths. Only a handful of studies have investigated the impact of psychological treatments for pediatric chronic pain on parental factors, and the relationships between changes in parental and adolescent factors. In the current study, we evaluated the effects of an intensive interdisciplinary pain treatment (IIPT) program based on Acceptance and Commitment Therapy (ACT) for adolescents with chronic pain, on adolescent and parental variables, and the relationship between parental psychological flexibility and adolescent pain acceptance. Methods: Adolescents (N = 164) with chronic pain were included, with a mean age of 15.5 years, and completed the 3-week treatment with an accompanying parent (N = 164). Linear mixed-effects models were used to analyze change over time (from pretreatment to 3-month follow-up) on parent (depression, health-related quality of life and parent psychological flexibility) and adolescent (physical, social and emotional functioning, and adolescent pain acceptance) variables. Additionally, linear mixed-effects models were used to analyze the relationship between parent psychological flexibility and adolescent pain acceptance. Results: Results illustrated significant improvements over time in depressive symptoms and levels of psychological flexibility in parents. Excluding social development, adolescents improved significantly in all assessed aspects of functioning and pain acceptance. Additionally, changes in parent psychological flexibility were significantly associated with changes in adolescent pain acceptance. Conclusions: Results indicated that treatment had positive effects for parents and adolescents, and a significant positive relationship between changes in parent psychological flexibility and adolescent pain acceptance was found.

Understanding the link between feelings of mental defeat, self-efficacy and the experience of chronic pain.

OBJECTIVES: 'Mental defeat' (MD) has been identified among people with chronic pain as a type of self-processing related to social role and rank. Research has linked it to anxiety, pain interference and functional disability. The relationship between MD and other cognitive constructs, such as hopelessness and depression, remains poorly understood. This study considers the association between MD, pain symptomatology and self-efficacy in the context of other cognitive factors. METHODS: In total, 59 participants completed a questionnaire pack assessing anxiety, depression, hopelessness, pain catastrophising and MD in order to examine the relationship with pain symptomatology and self-efficacy. RESULTS: Linear multiple regression analyses showed that anxiety was most strongly associated with pain symptomatology, accounting for 26% of the variance, while catastrophising showed the strongest association with sensory pain and MD the strongest association with affective pain. Finally, MD was found to be strongly associated with pain-related self-efficacy, accounting for 47% of the variance. CONCLUSION: This research has demonstrated the potential importance of assessing MD in chronic pain patients, suggesting that targeting these cognitions during interventions and therapy could be valuable. Furthermore, the study indicates that MD differs from related cognitive constructs involved in pain, such as depression, hopelessness and catastrophising.

Benzodiazepines May be Worse Than Opioids: Negative Medication Effects in Severe Chronic Pain.

OBJECTIVES: Opioid prescription for noncancer pain is increasing in Europe and the United States. Research and guidance have focused on the potential for dependency and medical side effects with high doses. In contrast, benzodiazepines have received little attention in the chronic pain literature, despite evidence for dependency and cognitive impairment in long-term use. We aimed to examine the relationship between these classes of medication use, mood, and functioning. METHODS: This cross-sectional study included patients (N=229) with disabling chronic pain who were about to start intensive pain rehabilitation. They completed self-report measures of mood, functioning, and responses to pain. We examined each patient's medication use and calculated a single morphine equivalent (ME) dose per person, and a similar diazepam equivalent (DE) dose. We examined the relationship between drug dose, mood, and functioning. RESULTS: Higher DE doses were associated with worse outcomes in most domains. Higher ME doses were more narrowly associated with worse functioning. There was no evidence for any benefit of these drugs; higher doses were not associated with less pain, fear, or disability. Higher ME doses were not more problematic, contrary to our predictions. The combination of opioids and benzodiazepines was associated with particularly poor outcomes for mood. DISCUSSION: This study is the first to examine both opioid and benzodiazepine use together in chronic pain. We found the anticipated negative effects of opioid medication, and particularly consistent associations between benzodiazepine use and poor well-being. Future guidance on chronic pain prescription should focus on restricting benzodiazepine use.

Emergency Department Staff Attitudes Toward People Presenting in Chronic Pain: A Qualitative Study.

OBJECTIVE: Patients who experience their nonmalignant chronic pain as intolerable sometimes present at Emergency Departments (EDs). However, as emergency medical services are set up to provide rapid treatment for acute injury or illness; there is potential for misunderstanding and disappointment. Literature on the topic of ED staff attitudes toward chronic pain patients is minimal, USA-based and methodologically unsatisfying. We carried out an in-depth, qualitative study identifying the attitudes and narratives of ED staff around people in chronic pain. DESIGN: Focus groups with ED staff; qualitative analysis of the group transcripts. SETTING: Regional trauma centre in the UK. SUBJECTS: Three focus groups, 20 ED clinicians, mean ED experience 8.1 years. RESULTS: The clinical challenge of treating patients in the ED stemmed from a mismatch between patients' needs and what the setting can deliver. Participants reported frustration with the system and with chronic pain patients' perceived inconsistencies and requirements. However, they also highlighted good practice and acknowledged their frustration around not being able to help this group. CONCLUSIONS: ED staff found people presenting at ED with chronic pain to be a challenging and frustrating population to treat. Staff was constrained by the fast-paced nature of their jobs as well as the need to prioritise emergency cases, and so were unable to spend the time needed by chronic pain patients. This was seen as being bad for staff, and for the patient experience. Staff suggested that care could be improved by appropriate information, signposting and with time invested in communication with the patient.

The role of physical activity and psychological coping strategies in the management of painful diabetic neuropathy--A systematic review of the literature.

BACKGROUND: Diabetes is rising in prevalence; painful diabetic neuropathy (PDN) is one complication of diabetes. PDN is primarily managed with medication but analgesic failure is common and people remain in pain and distress. It is unclear whether pain management strategies are appropriate for PDN. OBJECTIVES: To establish the effectiveness of physical activity and psychological coping strategies for PDN. DESIGN: Systematic literature review. DATA SOURCES: Ten online databases. ELIGIBILITY CRITERIA (PARTICIPANTS AND INTERVENTIONS): Controlled trials reporting specific results for PDN, investigating, (a) physical activity or (b) psychological coping strategies and measuring pain as an outcome. The search was restricted to published research with no restriction on language or date of publication. STUDY APPRAISAL METHODS: Methodological quality and risk of bias assessed with Cochrane collaboration and NICE checklist for randomised controlled trials. RESULTS: Of 1306 titles identified, four studies met the inclusion criteria. Two trials investigated physical activity and two investigated psychological coping interventions. Studies showed pain measures improved or did not worsen compared to controls, but methodological quality was moderate and results need cautious interpretation. LIMITATIONS: The studies were of small sample size and used a diverse range of outcome measures. There is high risk of bias from lack of blinding and attrition at follow up. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: The research literature in this area is sparse and inconsistent, despite the pressing clinical challenge of PDN. Firm conclusions cannot be drawn from the studies included. Further high quality research is required to match treatment provision to patient requirements.

Parental behaviour in paediatric chronic pain: a qualitative observational study.

OBJECTIVES: Parental behaviour appears to influence the adjustment of children with chronic pain. However, research in this area has failed to produce consistent evidence. Studies have tended to rely on self-report measures derived from adult pain populations. This qualitative, observational research provides descriptive data of parental behaviour in a clinical environment. DESIGN: A qualitative observational study was made of parents and adolescents in a physically stressful setting. Modified grounded theory was used to analyse verbal and non-verbal behaviours. METHODS: Eight parent-adolescent dyads seeking treatment for chronic pain were videoed during physical exercise sessions. Verbal and non-verbal behaviours were recorded and transcribed. RESULTS: Four overarching categories emerged: 'monitoring', 'protecting', 'encouraging' and 'instructing'. These often had both verbal and non-verbal aspects. Within these categories, more precise behavioural groups were also identified. CONCLUSIONS: This research identifies categories of parental behaviour that were derived directly from observation, rather than imposed on the basis of results from different populations. Four categories of behaviour were derived, which clarify and extend dimensions used in existing self-report instruments. Careful description of parental behaviours showed features that past research has neglected, and highlighted potential drawbacks of apparently positive parental actions.

Acceptance and values-based treatment of adolescents with chronic pain: outcomes and their relationship to acceptance.

OBJECTIVE: Psychological treatments for pediatric chronic pain are moderately effective. However, there have been few studies of the psychological processes associated with treatment response. This study examines the effects of Acceptance and Commitment Therapy (ACT) treatment on a severely disabled group of adolescents with chronic pain, examining relationships between outcome and acceptance. METHODS: 98 adolescents with pain, mean age 15.6 years, underwent an uncontrolled trial of 3-week residential ACT treatment. RESULTS: Adolescents improved in self-reported functioning and objective physical performance at 3-month follow-up. They were less anxious and catastrophic, attended school more regularly, and used health care facilities less often. Most positive treatment outcomes were associated with improvements in acceptance. CONCLUSIONS: An intensive ACT-based pain rehabilitation course was an effective treatment for disabled adolescents with chronic pain. Its results were theoretically consistent--improvements were associated with changes in acceptance and were achieved without pain control or cognitive restructuring techniques.

Physical and social functioning in adolescents with rheumatological conditions: a study of predictors.

AIM: This study examines possible predictors of physical and social functioning in adolescents with rheumatological conditions. Condition-related variables and psychosocial variables were studied, and their relative contribution as predictors was examined. METHODS: The study population was one hundred and twelve adolescents (11-18 years) attending secondary and tertiary paediatric rheumatology outpatient clinics in south-west England. These adolescents completed validated self-report accounts of disease history, pain and functioning (condition-related variables) and the Bath Adolescent Pain Questionnaire (psychosocial variables). Correlation and regression analyses were used to establish influences on physical and social functioning, examining condition-related variables and psychosocial variables as separate blocks. RESULTS: Physical functioning was independently associated with age at onset, intensity of pain, presence of depression and pain-specific anxiety. Social functioning was only associated with general anxiety. The presence of an inflammatory diagnosis had no bearing on optimal functioning in this study. CONCLUSION: Condition-related variables (age at onset, pain intensity) and psychosocial variables (depression, pain-specific anxiety) were equally important for physical functioning, whereas psychosocial variables (general anxiety) were more influential for social functioning. Understanding the impact of disease and associated variables in the adolescent rheumatology population should optimize targeted multidisciplinary rehabilitation for the young person and their family.

Veterans and chronic pain.

1. Musculoskeletal problems are the commonest reason for medical discharge in all the British armed forces. By definition, these problems are chronic and resistant to treatment. 2. Pain is also common in veterans who have experienced severe injuries (polytrauma), often accompanied by post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI) orpostconcussive syndrome. 3. In veterans seeking treatment for chronic pain, PTSD is common. There is also evidence for elevated levels of alcohol misuse in veterans who have been deployed to conflict. However, most veterans do not have pain, PTSD or alcohol problems. 4. Pain clinicians would benefit from training in meeting veterans' needs, in order to promote their engagement and successful treatment. This should include countering stereotypes, information about the military and support for the assessment and onward referral of PTSD and alcohol problems.

Role of psychological flexibility in parents of adolescents with chronic pain: development of a measure and preliminary correlation analyses.

Parent responses to the experiences of adolescents with chronic pain are deemed important. At the same time the best ways to conceptualize, measure, and intervene with these are unclear. The purpose of the present study was to develop a measure of parent responses based on the approach proposed in Acceptance and Commitment Therapy (ACT), an approach that focuses on psychological flexibility. A total of 183 adolescents attending a specialty treatment center for chronic pain, and adults attending with them, provided the data examined in this study. Standard measures of adolescent functioning and parent responses were obtained. In addition, the attending adults, who were mostly mothers, also completed a pool of items for an instrument called the Parent Psychological Flexibility Questionnaire (PPFQ). Preliminary analyses of these items showed an internal consistency of α=0.91. The total score for parent psychological flexibility was negatively correlated with protective and encouraging parent responses to pain, as predicted. It was also positively correlated with adolescent acceptance of pain and negatively correlated with measures of pain-related impact on their social, emotional, family, and developmental functioning. Additional analyses showed that the PPFQ yields significant unique information about adolescent functioning independent of age and gender and beyond that provided by another well-established measure of parent responses. There is increasing evidence for the effectiveness of ACT in the treatment of a range of behavior problems in adults and young people and in training for persons without identified "disorders." It seems potentially applicable for parent training in the context of adolescent chronic pain.